Defining Three "Early Stages" of Type 1 Diabetes

Written by Mike Hoskins
| Published on November 25, 2014

"What stage of type 1 diabetes do you have?"

That question could become a common one soon, if some leading diabetes experts succeed in establishing an official three-tiered delineation of the early stages of T1D in order to pursue research and treatments in preventing the autoimmune condition.

In other words, the kind of multi-stage disease model that exists for a handful of other conditions like Alzeimer's, cancer, kidney disease and beyond could soon be coming to the type 1 diabetes world. A precise set of definitions is being proposed for three early stages of T1D, aimed at putting specific labels to those who don't yet have type 1 but could be predisposed and at higher risk for eventually developing the autoimmune condition.

And no, we're not just talking "pre-diabetes" here. This goes way beyond that, into an actual scientific definition and screening process rather than the vague abyss drawing in millions of souls who may someday develop type 2 diabetes.

Yesterday, we published an interview with a diabetes endo-researcher who's pursuing insulin independence for those of us already living with type 1. Today, we're looking at another side of that research coin.

"Currently, you either have T1D or don't, but that does not fully capture the complexity of T1D for all people," said JDRF's Chief Scientific Officer Dick Insel at an October workshop in Bethesda, MD, that brought a handful of researchers and industry experts together to discuss this issue.

This push for a new three-stage scheme of early type 1 diabetes comes on the heels of two decades of screening and research by entities like TrialNet, which have helped get a better look at the early onset of type 1 -- even if we don't have a full grasp at this point on what causes the body to attack the immune system and kill off its insulin-making cells. The experts pushing for the schema say it will help create better clinical trials that could lead to faster drug development, treatment and even T1D prevention.

Stage 2a: While it might not be necessary, some think this intermittent stage should be added for rising glucose and A1C values on top of the multiple auto-antibodies that would be present (fasting glucose levels 126 and above; random glucose value of 200 or greater, and an A1C above 6.5%.)

Stage 3: Classic symptomatic T1D requiring insulin therapy

"This is not an area that's really known to many other potential players in regulatory or research worlds right now," said Cynthia Rice, JDRF's vice president of advocacy and policy. "But that was the point of the workshop -- to bring these researchers together and bring this topic more to light for R&D going forward. This could have really significant implications for prevention of type 1 diabetes, helping us develop research and new treatments along with being able to better establish a regulatory pathway."

A big goal here would be to eliminate that "surprise" factor in a D-diagnosis that often leaves families -- especially kids and their parents -- reeling from sky-high glucose levels and dangerous DKA experiences. The same goes for adults, who are still often misdiagnosed by both general practitioners and endocrinologists who too-quickly toss out a type 2 diagnosis when it should have been T1D. With childhood obesity and insulin sensitivity rates rising, the JDRF sees this as the time for re-defining these early stages to help make it more clear what kind of diabetes someone may have or be on the path toward.

And if this can contribute to delaying or even preventing a full-blown T1D diagnosis, then it's worth pursuing of course!

Rice says this is an emerging hot topic for the diabetes medical community, although experts have been thinking on it for years as the growing evidence has come from trials such as TrialNet and others -- all of which focus on prevention by exploring the histories of early diagnosis in PWDs and families of those living with T1D. A research publication on this is being finalized in the coming months, and that will probably lead to more discussion at next summer's American Diabetes Association Scientific Sessions in Boston (June 5-9, 2015).

"This defines the risk of doing nothing," Rice says, in regard to the stages and prevention efforts. That's an interesting thought.

Still, while defining specific stages of T1D onset seems to have potential for the some various avenues of cure and prevention research underway, there also seems to be potential for a lot of confusion in the broader patient spectrum if new terms are embraced.

After all, there's already a lot of confusion in the world of diabetes, and as years of conference sessions have revealed, even top minds in the field can't agree on how many types of diabetes exist and what they should be called. Neither does our own patient community agree; we often grapple with confusion over diabetes labels and can be quite divided on names for this type or that.

So really, we have mixed opinions on this concept. Yes, it does sound worthwhile to pursue for the clinical and research side. But we caution against too much focus on these stages amongst the patient community out in the real world, where we are already dealing with so much misinformation and misunderstanding about what we're all living with.

Keeping it simple seems like the best path forward for us PWDs, even while adding complexity might help the R&D side lead us to better treatments.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community.
The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines.
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Archived Comments

Mike Ratrie|2014-11-25

My naive response to this interesting post:If defining stages leads to more effective treatments to extend the honeymoon period, then I'm all for it.Also, if defining stages leads to more a more effective diagnosis protocol where adult T1s and LADAs get correctly diagnosed, then I'm even MORE all for it.

Tim Steinert|2014-11-25

To me, more effective treatment is the ONLY reason to have these labels, being one of those originally misdiagnosed. This disease is about dealing with what IS and the sooner T1s, their doctors, family and friends can come to grips with it the better.If WHAT WILL BE can be delayed--very cool.

StephenS|2014-11-25

Mike, excellent article, with great quotes too. It seems that if we're going to go down this road, there has to be a benefit, it needs to be handled correctly every time, and people need the proper education so they can play an important part in their own health going forward. Thanks for shedding a little light today.

Dan Patrick|2014-11-27

Hi Mike,A good review. I have a different suggestion. One, the case can be made that the onset of type 1 diabetes, T1D, is multi-faceted based upon age. Example, the speed a which a very young child, a teen, and an adult a struck with T1D. Second, there are a number of sites that will list the ten (10) symptoms that present an indication of the start of the onset of T1D. A different question would be to ask the ordering of the ten symptoms. Meaning what comes first! Many of the ten are blown off until blood glucose and ketones go through the roof. There is another observed item. Some T1D's can run into a short period of time where the first introduction of external insulin has a triggering effect on one's production of their internal insulin. An interesting survey for diatribe would be to survey and find out if there is pattern for the ordering of the ten symptoms. My personal observation with myself and a family dog which developed T1D was the dryness of the mouth followed with the thirst factor second. So, what has happened in the mouth is an interesting approach to the analysis of the changes in the individual body chemistry at the start of the onset of T1D. Dan

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